Hello - I have helped lead a support group for many years and am looking into protocols aside (i.e. Rife) Can anyone direct me to an link or the best organization who compiles data and tracks progress on Lyme? Having some sort of basis point to talk from is important for discussion. I know there is the LD association in Jackson, here in NJ. But thought I would start here first. Thanks!
Posted by lou (Member # 81) on :
No one is doing this, especially not for alternative treatments. Such stats are hard to come by for any lyme treatment, but especially alternative ones. What you get instead is testimonials from those who think it helped or who are selling something, and silence from those who weren't helped. Pretty hard to draw conclusions from this situation.
Posted by RJPII (Member # 5876) on :
Thanks Loe. Actually - I should clarify - I am looking for sort of info. or statistics of patients' remission and cure rate by LLMDs overall. Specifically, I think the most effective measure would be tracking the % of patients of have had success on non-alternative regimins.
If this data were available, it would make the conversation with support group members much more credible. More importantly, it would greatly help those considering adding or moving to alternative methods Any other thoughts here? Thanks!
Posted by lou (Member # 81) on :
I see. Didn't understand what you were looking for. Dr. Burrascano's database program will probably provide this kind of information. He is still looking for lyme docs to join this, so if you are in a position to do so, maybe help him recruit docs. If more of them provide info, the numbers will be better.
Posted by kam (Member # 3410) on :
I was looking for the same thing when I first came down sick.
I talked to one organization about it and they were in need of someone who is able to create a program so we could start taking in data.
I know I was possibly dx with MS, Myasthenia Gravis, AL's and other conditions.
It was a matter of ruling them out.
But, the bottom line is when I researched these conditions they sent me forms to fill out so they could keep track and also contacted me a year later for a follow up...which at the time I was able to tell them it was lyme disease.
But, they also had the funds for this type of research and volunteers.
Posted by bettyg (Member # 6147) on :
my suggestion is going to SUCCESS STORIES; most of these mention if it was traditional or alternative that got them well if i am reading your post correctly! Posted by kam (Member # 3410) on :
It seems I read that Cowden Protocol has a 70% ? rate...can't recall if it was improvement or well enough to return to work.
Posted by RJPII (Member # 5876) on :
Thanks everyone, I will look into these things including the Cowden protocol
Lou - I will definitely ask my LLMD about this. I wonder if Dr. B's has provided the data anywhere.
I will also have review the success stories thread and maybe that would give me a better feel for it overall. Thx!
Posted by kam (Member # 3410) on :
I also recall reading that lyme docs have a 70 to 80% ....again...not sure what the words were....improvement rate, success rate???
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